fertility impairment). Not well understood, however, is the optimal periodicity of follow-up contact, the value of specific screening/monitoring tests, and the effectiveness of interventions to ameliorate some late effects. Follow-up protocols are available, but they have generally been developed by individual institutions and vary in their recommendations. The lack of clarity regarding the effectiveness of interventions contributes to problems with health insurance reimbursement.

Clinical practice guidelines are “systematically developed statements to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances” (Institute of Medicine, 1992). The foundation of clinical practice guidelines is a systematic review of available evidence—a scientific investigation that synthesizes the results of multiple primary investigations. Conducting a systematic review to answer a specific clinical questions general involves four steps (Cook et al., 1997; Institute of Medicine 2001):

  1. a comprehensive search of potentially relevant articles using explicit, reproducible criteria in the selection of articles for review,

  2. a critical appraisal of the scientific soundness of the research designs of the primary studies,

  3. synthesis of data, and

  4. interpretation of results.

To conduct systematic reviews, the Agency for Healthcare Research and Quality (AHRQ) supports 13 Evidence-Based Practice Centers (EPCs) in partnership with private-sector organizations (http://www.ahcpr.gov/clinic/epcII.htm, accessed March 17, 2003). Since 1997, the EPCs have completed 64 evidence reports, but none of them directly address issues related to survivors of childhood cancer.1 The Late Effects Committee of the Children’s Oncology Group (COG) has taken steps to develop guidelines for the follow-up of childhood cancer survivors (Melissa Hudson, St. Jude Children’s Research Hospital, personal communication to Maria Hewitt, December 20, 2002). Guideline development requires considerable resources for conducting systematic reviews and for the full complement of needed expertise (e.g., health care providers, methodologists, consumers). The development and dissemination of guidelines alone has minimal effect on clinical practice, but a growing body of evidence indicates that guidelines implemented with systems in place to give providers information about

1  

One EPC report reviews evidence regarding the management of cancer-related pain, depression, and fatigue (http://www.ahcpr.gov/clinic/epcsums/csympsum.htm).



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